Your day 13 beam room music rundown:
- “Fool In The Rain,” Led Zeppelin
- “I Am a Rock,” Simon and Garfunkel
- “Days Like This,” Van Morrison
I’ve noticed in the last few days that I’ve changed my language when talking about myself and my disease. Previously, in conversation, I mostly found myself referring to my “brain tumor.” I suppose I was at least partly used to that term because that was the language big R and I had been using with little R. That’s part of it, but it’s not the whole story. Somehow “brain tumor” left just enough wiggle room, enough ambiguity, that I suspect I subconsciously derived a tiny bit of comfort from calling it that.
A few days ago at breakfast, we talked with little R about “what kind of sick” I am. The folks at MGH have been so helpful in preparing us for that conversation, even going so far as to suggest phrases. “Some kinds of sick you can catch from other people. You can’t catch the kind of sick that papa has.” and “The word cancer is kind of the like the word dog. Just like there are little dogs and big dogs and in between dogs, there are lots of different kinds of cancer.”
But, when it actually came time to talk about cancer, specifically, I wasn’t sure how well little R would understand, but (as in so many things) he completely surprised me.
Me: “Do you know what kind of sick I have?”
Little R: “Yeah dude, you have a brain tumor.”
Me: “And my tumor is actually something called cancer.”
Little R: “What is cancer?”
Me: “Well, everything in your body is made of cells. Cells are kind of like the Lego building blocks of your body. Also, your cells have instructions inside of them to tell them how to make copies…”
Little R: “You mean DNA!”
Me: “Uhhhh, yeah, that’s right. How do you know about DNA?”
Little R: “The Magic School Bus!“
Me: “I should have guessed. So, sometimes those instructions can get messed up and cells can make too many copies of themselves and grow too fast. That’s cancer.”
Little R: “But how did it start!?”
Me, stumped: “That’s a great question. No one really knows how it starts. Sometimes the instructions get jumbled and nothing happens, and other times they get messed up and the cells grow all crazy.”
Little R: “Oh, okay.”‘
Amazing what that tiny, six year-old mind is capable of.
At any rate, maybe it’s because of this conversation, maybe not, but I’ve been finding myself using the word “cancer” more intentionally these last several days. It’s simultaneously scary as hell but also kind of weirdly empowering. As ever, language makes a difference.